Thus endeth Thanksgiving weekend

November 27, 2006 by barbara

by barbara

It's a bittersweet thing when Garry goes home. My "little brother" spends every holiday with us, giving us some quality time together. The quality varies, depending on '" ummmm, the variables. Garry is a sweet, kind, gentle and altogether compliant man. He has a boatload of friends. He has a job in the community. He plays softball, volleyball and basketball. And he has mental retardation. Read on.

Garry makes a lot of mistakes. He forgets things. He eats too fast. He has to be reminded every day about pretty basic things. Neatness is not his strength. The older we get, Garry and I, the greater is my understanding of our mother's growing impatience with him. In the years just before her death, she climbed on Garry's back pretty routinely. I used to think she was unjust in the extreme. And in fact, sometimes she was. But she got pretty close to zippo in terms of support or help from her family. (sigh) She never asked. We never gave it.

Parenting (or sistering) a person with a significant disability can leave you feeling as though the gate to your soul has been left open, and everything has seeped away. All the reserves. The patience, the kindness. Doesn't really happen, of course. But as I said, it's possible to feel that way sometimes.

When Garry was desperately ill a while back, he lived with us on and off for a year. And so it came to pass that I had the opportunity to walk a chunk o'miles in Mother's shoes. (Bad feet are a family trait.) And I walk it many times a year when he stays here with us. Like Thanksgiving weekend.

I've finally been able to admit that the degree of hyper vigilance required to help Garry and his peers stay safe, clean, healthy, employed (when possible), and happy is sometimes exhausting. Which has helped me understand Mother in a way I never did before. Talk about too little, too late.

I know, I know. There is joy and love and laughter that goes with this territory, too. I've gotten a fair piece of that action as well. And it's absolutely true that it more than compensates for the down-side.

I need to arrive at a point here, don't I?!

Okay. How 'bout this? Don't miss the chance to forge a relationship'"a real one'"with someone in your family or among your circle of friends who has a disability. It's not contagious. And the heart that beats within a damaged body or inside someone whose mental capabilities are deemed sub-par is generally a good heart. A true heart. Someone well worth knowing. Listen to them, even when it's difficult. Hear what matters most to them.

And another thing, as long as I'm in lecture mode? Please rethink the expression, "He's such a retard!" and its equivalents. I've always been a little touchy on that subject, but since I've gotten to know my brother in a whole new way, I've morphed from touchy to severely cranky.

There's a school of thought and action out there called "People First." To illustrate: Garry is a brown-eyed man who lives, works, plays, pays taxes, votes, worries, laughs, forgets things, cooks, and has disagreements with his friends sometimes. He has a world-class smile. He also has mental retardation. See how it works? People first. Mental retardation is not (nor should it be) the primary definition of who he is.

I'm not sure what precipitated this outpouring here. Maybe because I just got back from bringing Garry to work. Because on the way there, it crossed my mind that it would be nice to reclaim our privacy at home, followed by Huge Guilt for thinking such a thing.

When we got to his workplace, the little brother who used to cringe at public (and private) displays of affection, threw his arms around my neck, hugging me tightly. And I said to him, "I love you, little brother." And he laughed and said, "I know, little sister." I watched his slow, steady progress to the door and through it, as he disappeared into the building where he works.

And so it goes.

Posted in

Barbara's Blog

I have a 16 year old grandson who plays the piano, who loves to work on the computer writing stories accompanied with Disney or Muppet type character drawings, who loves to tell his own jokes
and laugh and laugh. He is also autistic. Barbara, I couldn't agree
with you more. It's "People First."

Bless you Barbara.

Great post. People First is a great reminder. My father had a chronic illness (a brittle, type-one diabetic who passed out a lot, this was mostly before the great gains in diabetic therapy---including testing the blood four times a day and giving insulin shots accordingly.) Anyhow, I learned that if you can't deal with the disability you fundamentally lose the relationship---and that is almost never worth it.

Besides, we're all one drunk driver, one lethal stroke away from being seerely disabled ourselves.

One of my favorite stories about a mentally-disabled kid, which came to me via a friend's cancer support group. A single mom in her group had two teenage sons, one of whom had Down's Syndrome. She told her sons about her breast cancer and how she'd have to have surgery followed by chemo and radiation ; how she'd lose her hair and get pretty weak. At the end, her mentally disabled kid threw his arms around her and gave her a big kiss and happily announced, "Mom, I'm so glad this is happening to you and not me."

I love this story.

Thank you!

Ah, you do People First very well, MLS. We learn slowly, but we learn well, don't we?! Have you read Ann Bauer's marvelous novel (rooted in her real-life experience as mother of a son with autism)? It's a great read, and a sweet/sad/funny/poignant tale.

". . . if you can't deal with the disability, you fundamentally lose the relationship." Pretty much, although Garry has taught me that there are second and third and tenth and thirtieth chances. Wish I'd gotten it right sooner. Wish I had it right even now. Definitely worth plugging away at it, and Garry seems to be infinitely patient with my learning curve. Isn't that something?! Thanks, Lynnell.

No, I have not read but thank you for bringing this to my attention.

thank you for saying it so well.

very touching Barb, thanks for sharing...

You must be Attila the Honey. Thanks.

Thanks. Really appreciate your feedback!

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